Jaeda, A different kind of perfect.

19 Nov

Jaeda and AngeAnge’s life is pretty perfect to anyone looking in from the outside.

A handsome husband she adores and he treats her like his queen. They live in a perfect part of Australia’s Sunshine Coast, and life was exactly what every girl would dream for herself.

Jett, their firstborn, was a happy and healthy baby, who grew into a clever and curious toddler. When baby Jaeda came along, the very picture of perfection, it truly seemed as if life couldn’t get any better.

One day, when Jaeda was six months old she became gravely ill. Their bouncy, smiling girl was listless and drowsy, and her fevers were through the roof. Like any concerned parents Michael and Ange took her straight to the medical centre where they were told she was suffering tonsilitis and she needed to sleep it off.

Nothing to worry about.

Six hours later, after watching her baby rapidly deteriorate, and become more lifeless by the minute, Ange’s maternal instinct told her that something was dreadfully wrong. She rushed her daughter to Emergency. They discovered afterwards, had Ange not trusted that instinct, baby Jaeda would have survived the night.

Whilst at their local hospital, Jaeda began to have seizures and finally a lumbar puncture revealed that she had meningitis and after doing a culture they discovered that she also had HSV encephalitis causing massive swelling in her brain.

Encephalitis is not actually a virus, but a term used for inflamation of the brain caused by a virus. There are a number of virus’ that can cause viral encephalitis including rubella and measles, but Jaeda’s was caused by the herpes simplex virus. Someone with a simple cold sore came into contact with Jaeda, and instead of her coming up with a standard blister, the virus went into her system and headed for her little brain.

Coming home after 33 days in hospital.

Coming home after 33 days in hospital.

They were rushed to Brisbane Hospital where a PICC line (intravenous line) was put into Jaeda’s little arm to pump antibiotics straight into her system. CT scans revealed that the swelling of her brain had caused significant damage to her front and left lobes.

Ange and Mick were told their little girl would never be the same again. As she was so young and undeveloped, there was no telling the extent of the damage, or what it actually meant for their futures and they would just have to wait and watch their little girl develop and see how she progressed.

Only time would tell.

Ange and Jaeda stayed in the hospital 24/7 for 33 long days. With no family support in Queensland, her in-laws came and took her toddler, Jett, to their home on the Central Coast. Although she knew he was safe, it was the first time she’d been away from him for such a long time, further tearing at her heart. There were many tears shed, and many nights just watching her baby, praying for divine intervention.

Ange never gave up hope as she was simply grateful that her child has survived this horrific illness.

Jaeda and jett

Ange knows Jett will grow up to be an accepting and caring man because of his sister.

Slowly, day by day, a little light came back on in Jaeda, and when she looked into her Mama’s eyes and her smile returned Ange knew that no matter what happened, everything was going to be alright.

Jaeda is now a bubbly and happy 2 and a half year old girl, and to look at her you would never guess there was anything awry.

The doctors explained to us that when a baby receives a brain injury, sometimes the other parts of their brain learn to compensate and they adapt. Generally, if this is going to happen, it will happen in the first 2 years. It’s been two years now and although there are signs of improvement, we don’t think that will happen with Jaeda.

It was only when she missed reaching milestones, that we all take for granted in our healthy children, that the extent became apparent. Most babies will clap or wave by 12 months, but Jaeda did not. Most children will reach up to be picked up, Jaeda did not.

Ange found herself staring at other children and comparing them with Jaeda and she began to obsess over the things that Jaeda could not do.

I realised I needed to focus on the things that Jaeda could do. I need to remember that we are lucky that our sweet girl is still with us, and remember that she is amazing in so many ways. She brings us so much joy.

When Jaeda did finally clap recently, Ange was the proudest mum in the whole world. The whole family did a happy dance.

Jaeda suffered hearing loss and cannot speak, so she communicates with ‘gaga’ sounds. She’s trying to talk but the words simply don’t form, and if she’s excited or frustrated that can become squealing.

People ask me to control her, or make her stop. I always thought I was the kind of person who didn’t care what people thought, but when I see people looking at my child and rolling their eyes I can feel myself become a Mama Lion. Don’t you dare judge, I think, you don’t know what my little girl has been through.

When Ange was given hearing aids for Jaeda, she discovered that the angry looks stopped. Now Jaeda looked like there was something wrong and people cut her some slack.

JaedaWhy does a disability have to be obvious for people to be kind? Why do you need a symbol like hearing aids to stop the cruel stares? I just want to protect my baby because she hasn’t got a voice. I always feel like explaining what’s happening with Jaeda, I feel with anyone we speak to, no matter how close they are to us, that I have to tell them what she is achieving and what she is not. I feel better in myself if everyone has an understanding as to what is going on in her little brain and how she is progressing.

Jaeda has started at a mainstream kindy now, with her school being given inclusion support by way of an extra teacher at hand. Being integrated with ‘normal’ children is proving to be wonderful for her development. It is also affording Ange a much needed break from the rigours of parenting a child with demanding needs.

I asked Ange if she ever wonders why me?

No, never. I believe only special people are chosen to handle this. I wish she didn’t get sick, but she did. My husband has been my biggest saviour throughout this. He is the meaning of a best friend, my greatest buddy and together we can do anything. I look at him everyday and thank god he is mine. Without this man I couldn’t have handled the past 2 years.

Ange would like to start a support group for mothers with children that have disabilities. Any disability.

Jaeda and I spend a lot of time awake at night. She just rocks and hums for hours in her room, but while she’s awake, I can’t sleep. I would love to jump online and have a read about parents feeling exactly the same as I do. I want parents to have a laugh about how some people handled a situation they experienced and shine a light on how someone else handled something.  Just talking about it, realising you are not alone, gives you strength.

She would love to create a symbol for people to wear, like a pink ribbon, so that people can recognise that their child is different and perhaps not be so quick to judge behaviours. Ange believes that her darling Jaeda is indeed still perfect, she’s now just a different kind of perfect.

jaeda 3If you are interested in joining a support group for parents of special needs children, or would like to help Ange set one up, please contact me and I’ll get you in touch with each other.

If you have any ideas for a symbol, Ange would love to hear your thoughts.

I am launching my new book on the 28th November. The countdown is on!

Cook Once, Feed All by Danielle Colley

Cook Once, Feed All is about making your life easier whilst preparing nutritious and quick food for your family. This book is a collection of family friendly recipes, all accompanied by Danielle’s often funny and charming story telling.
Hailed by Mouths of Mums as the ‘must have recipe book for all families’

I am giving away 1 Cook Once, Feed All ebook a day until the big launch party!

For your chance to win Cook Once, Feed All today pop over and like the Keeping Up With The Holsbys Facebook page, and leave me a message about your most loved family meal. Winners will be announced tonight and will recieve the ebook before it is launched.

If you subscribe now to the Keeping Up With The Holsbys mailing list now you will automatically receive my new mini-eBook ‘A Bit On The Side’  – A collection of fabulous summer salads and side dishes.

To pre-order your hardcopy of Cook Once, Feed All head to the Holsby Shop right now and you will be the first to receive the hard copy book after it launches on the 28th. You will also receive the Cook Once Feed All eBook (worth $15), plus the new eBook ‘A Bit on the Side’ (worth $5) as a bonus gift in your inbox today.

Three for the price of one, and you save $20.

Hooking up with the IBOT gang because I’m blogging on Tuesday. Check out EssentiallyJess for more cool blogs.

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21 Responses to “Jaeda, A different kind of perfect.”

  1. coloursofsunset November 19, 2013 at 9:20 am #

    What a gorgeous little girl, with heartbreaking story. It is so unfair. My husband’s godmother’s granddaughter (if you followed all that) has hydrocephalus. Short story is that in her 4 years on earth, she’s had 7 brain surgeries and has a shunt in her brain to remove the fluid that keeps building, only the shunts keep failing and little Taylor has seizures and goes unconscious. There’s no cure. Her little body has been through so much. Her parents are the most strong and courageous people I know. Along with all parents who have been dealt this hand. It sure puts things in perspective, doesn’t it? Thoughts and prayers for your friends and gorgeous Jaeda.

    • Keeping Up With The Holsbys November 19, 2013 at 12:46 pm #

      Unbelievable perspective!
      That poor sweet little angel. It’s so much to ask for a little body to bear.
      My love to your friends x

  2. empressnasigoreng November 19, 2013 at 10:53 am #

    How scary that something as simple as a cold sore could have such profound effects. My best friend has a son who is profoundly disabled as a result of a birth accident. She is in Melbourne and gets a lot of support from a Cerebral Palsy group in Victoria. her son also goes to mainstream school and I think the benefits for him and for the other kids are enormous.

    • Keeping Up With The Holsbys November 19, 2013 at 12:44 pm #

      I know, right?? Scary indeed. I think that the benefits of special needs children in mainstream schools go way beyond education, doesn’t it?
      My love to your friend on her journey.

      • empressnasigoreng November 20, 2013 at 10:25 am #

        For sure. My kids have both gone through school in this era of mainstreaming and are so much more comfortable with people with disabilities than most adults (including myself) are. My daughter is now doing volunteer work in an aged care facility as is not fazed by it at all.

  3. Michele November 19, 2013 at 12:37 pm #

    There are existing support groups/play groups for parents/kids with disabilities PlayConnect I think it is or go to the playgroup association and look it up althoughI guess this is more of a playgroup for the kids it is also a way for parents to support each other. Also the govt Disability group in each state (ie Disability Qld) or the CHild Health section of Qld Health often has lists of support groups)

  4. Have a laugh on me November 19, 2013 at 12:59 pm #

    What an amazing and heartbreaking story, for such a bright button to be struck down so young, how horrific. Never ignore a mum’s instinct, how true is that!! I love how amazing her parents are, they are doing what we should all do, be grateful for what we ‘can do’ and not judge others or look at what we can’t do. Thanks for sharing this story and I hope a support group is formed. I am a great believer in having those with a disability or impairment in mainstream schools, I want my children to grow up accepting that there is no normal, we are all the same in the fact that we are all different. xx

  5. ksbeth November 19, 2013 at 1:25 pm #

    what a heartfelt story about this lovely girl )

  6. Zanni Arnot November 19, 2013 at 3:08 pm #

    What a gorgeous girl, and how frightening that must have been…Having a normal birth is overwhelming enough, I just can’t imagine. x

  7. ann November 19, 2013 at 3:22 pm #

    Amazing story, what a little angel she is. What a brave family, good luck to them.

  8. laurenm83 November 19, 2013 at 7:55 pm #

    What an amazing story. I really hope a support group is started to provide further support and love to families. Sending strength and love to Jaeda and her amazing family x

  9. Jody at Six Little Hearts November 20, 2013 at 9:56 am #

    Such a gorgeous little girl. Thankfully she is so young and will receive the best therapies available to maximise her potential. All the best.

  10. EssentiallyJess November 21, 2013 at 4:03 pm #

    Some families are jus so inspirational aren’t they? She is such a beautiful little girl, and so blessed to have the parents that she does. Thanks for sharing xx

  11. Lesleigh November 21, 2013 at 4:26 pm #

    The amazing strength and love from a family is truly inspiring.

    I have a daughter with similar symptoms with no diagnosis and she gives me strenght each day.

    Would love to help facilitate a support group or an awareness campaign. Please forward my details to the family.

  12. mummyflyingsolo November 23, 2013 at 4:23 pm #

    Oh as a mum I wanted to cry reading this. Having your child so sick must be terrible. I’m glad her little one is improving now and hope she finds the support she needs.

  13. maxabella November 24, 2013 at 5:51 pm #

    Ange sounds like just the sort of mum that Jaeda needs. They are so lucky to have each other. x

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  1. The big mouth that kicked the hornet’s nest. | Keeping Up With The Holsbys - February 14, 2014

    […] I write about swingers, and I write about families with disabled children. […]

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